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Endo visit today

Discussion in 'Parents of Children with Type 1' started by SandiT, Apr 8, 2013.

  1. SandiT

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    So we had our endo visit today, our 3 month visit, even though I realized it's actually been more than 3 months, lol. She was dx in Dec.

    The endo is much like me... although the numbers are good (and K's a1c was 7.2, which made the endo happy from her 8.3 last time), she was as unhappy with the lows as I am. I was relieved by that, odd as it might sound.

    She also was 100% on board with us getting a pump as soon as possible. It looks like it'll be a one-touch Ping, which I like my research on. I do not want pods. Although it does sound freer, the "remote required" is just not realistic for our family.

    The endo stated that she thinks we'll be happier just getting Kira's numbers more under control, rather than using the cgms. She thinks it will make us crazy by going off every 5 minutes, lol.

    I will see how the pump does. If we get the control we need from that, then I will dismiss the idea of the cgms.

    I was a little surprised she wasn't bigger on it, since she seemed very concerned about the lows and a seizure.

    Anyway, she said that she's very, very positive on kids on their honeymoons using pumps (oh dear, it sounds so wrong on so many levels! especially since this would be the WORST honeymoon EVER, if it were a marriage, lol).

    Kira is 6, but she's on literally toddler doses, and the doses are going down, down, and down. She's currently on a 1:60 ratio, no correction until 300, and a correction factor of 200 (1/2 unit brings her glucose down 100).

    These doses are so very sensitive that it's sometimes impossible to predict the outcome. If I'm off in my factoring by just a few carbs either way, she can plummet or zoom. With a pump, the ability to deliver more accurate doses would be available.

    I will wait and see if the pump provides the improvement in numbers that my endo thinks it will. If the lows continue, I'm going to push for the cgms next time (probably sooner than her 3 month visit).

    I believe I could have pushed harder for the cgms and gotten it, but she sort of convinced me that the cgms might have the end result of me just trying to control it MORE, not less... and that the alarms might be more annoying than useful. My personal jury is out, but I can still push for it next time if I don't feel the pump is the "fix" that will help with these lows that upset me so much.

    Anyway, now she's sick, so we're spending the next couple of days on sick care.

    Ain't d-life grand? ;)
     
    Last edited: Apr 8, 2013
  2. pianoplayer4

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    That sounds like a pretty good appointment!

    I don't agree that the cgms alarms too much, I think you shouldn't start both cgms and the pump at the same time... cause thats a lot of change... but you can really customize the alarms... so you have control on how often it goes off
     
  3. coeen

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    Nice Job.
    We bought both at the same time. Started the pump, then 2 months later started the cgm. Didn't always use it every time but now he has it on all the time. We have the alarms only turned on for lows. Everything else I just monitor myself so they aren't going off all the time. I can see if he is going hi and then I just correct. I also check him at night anyway so if he is hi then I can also correct then too. I would hate to have the alarms going off all the time. Good luck on you choices.
     
  4. Ali

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    You can set the alarms to alert as little or as much as you want to deal with. You also could set them to not alarm except for a crazy low and use it to sort out insulin needs both basal and bolus needs for various activities retrospectively. A clinic or Endo with a large amount of Cgms experience can really help. Ali
     
  5. SandiT

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    My husband was not very positive about her a1c. He was even more, "but if the lows come up, so will her a1c, and 7 isn't that great."

    I don't know how to explain to him. And since I am the one who deals with her insulin about 90% of the time, I almost feel like he's blaming it on me. :(

    I will keep looking into the cgms. I'm not giving up on it at all, I'm just going to give the pump the opportunity to make as big a difference as the doc thinks (or not to).

    Those lows are just really bothering me something fierce, and the doctor didn't make me feel any better. We can't get the pump until next month, so I'm hoping lowering her insulin (yet again) will alleviate them. Otherwise, I think I'm going to get pushy about the cgms.



    Speaking of can't have it until next month... can someone please explain to me how you can MISDIAGNOSE a type 1 diagnosis?? That's their excuse for no pump for 6 months... because of "misdiagnosis". Of type 1 diabetes? What?
     
  6. MommaKat

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    That sounds like a great appointment, and I'm glad you felt like your endo was supportive!!

    As for your question, I thought I'd heard every excuse in the book for not prescribing a pump for 6 months, but now your endo swung in with a new one. Not buying that for a second!!

    As for the cgm vs pump. I'm one of those moms (I know there are a few of us here) that doesn't understand why in the world an endo would recommend pump therapy without cgm therapy. Yes, I get that starting both at the same time can be a lot of change. I also think that some families are fine - better even - starting both at the same time, while others are better off doing one at a time. For us, I wanted cgm first b/c of all the lows she was having, and because going to the pump meant she was going to have insulin infusing all the time.

    Too many lows, hypoglycemic unawareness, etc. are the reasons given for medical necessity to back up cgm, so I find your endo's reasoning beyond odd. For us, it comes down to this. Dd is extremely hypounaware, especially at night. I wasn't sleeping enough, my sanity was slipping, and her health was suffering. Now that we have cgm, I sleep more. I don't make basal adjustments unless she's wearing a sensor. If we weren't paying OOP, my kiddo would insist on wearing CGM with no breaks ever. For a 13 year old who's starting to hide some aspects of D, that says a lot about the benefits of CGM. She doesn't begrudge the alarms, she relies on the trends and alarms to manage care and head off the highs and lows.

    Last thought - your dh is right, technically speaking. As you eliminate some of the lows, the A1C can go up. But, at the same time, the finite dosing made possible with pumping will also eliminate some of the highs. As you get less variability with those two changes, they tend to cancel each other out. It is true that the first A1C following pump start can be a bit higher, but after that they tend to go down and control improves. I just greatly dislike the word control. Better management might be a closer statement, because none of us ever controls D or gets rid of all highs or all lows.
     
  7. Sarah Maddie's Mom

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    I can think of a number of reasons why an endo would prescribe a pump without a cgm, or a cgm without a pump at the same time. It is entirely possible to maintain good glycemic control with a pump and finger sticks, for one. Also, it's not a small thing to ask a child to wear both an infusion set/pump and a sensor/transmitter. There are also downsides too, becoming - hyper dependent on the numbers, the potential for obsession and hyper responsiveness. Type 1 is a life long condition, everyone, parents and kids need to learn how to live with D without D taking over their lives. Technology is a good part of the tool kit, but it has it's price.

    As for the insulin "infusing" it's really not that big a deal. Kids on long acting insulin have insulin "functioning" which in many ways is more potentially problematic than a short acting insulin "infusing".

    To the OP. Tell your husband to either get with the program, or stop second guessing. An A1c is only as good and the standard deviation it entails. If you're getting a "good" A1c with too many lows then it's not a good A1c.
     
  8. MommaKat

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    Never disagreed that there aren't - simply stated mine (and others') belief that we feel safer having both - at the same time... and why. And, that for some families, it is possible to start both at the same time. Not because one way is specifically better than another, but that each family has or desires what works best for them, and an endo's beliefs aren't always aligned with that. Patients are patients, not text books. We differ in how we feel about and approach things. I shared but an opinion. Most people seem better equipped at the idea of take what works leave the rest...
     
  9. SarahKelly

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    I'm not sure about a lot of the above.
    Hear this in all the kindest voice, not that I know all or have it all figured out, maybe the opposite now 3 plus years later -
    First Isaac is still "honeymooning" according to his TDD and his ISF is 350 and C:I ratio is very high, he is very sensitive still to both insulin and carbs so we have found that although the pump is incredibly helpful for giving tiny doses it is the CGM that allows us to have peace of mind with keeping his BG in such tight control.
    The pump has added the additional questions of "did he get the insulin?", "how will his skin do with this new site?" and "will the pump bumps never end?!"
    I was completely unprepared for the fact that pumps aren't 100% fail proof, air bubbles make big horrible highs and sometimes sites clog.
    Now with the CGM we are able to see what is happening so that we can take care of it before things get too high or too low. His CGM doesn't alarm every five minutes, but it does go off at least a few times a day - usually the highs post meal make it alarm, but they're very temporary.
    Anyhoo - I am glad your endo is so supportive :) It is wonderful to have a supportive group to work with you through all of this ;)
     
  10. SandiT

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    The excuse about "misdiagnosis" is from Aetna, not my endo. My endo was very "let's get her on it right away!"... but Aetna is all, "well, she might not REALLY have diabetes, you know.... you know.... yeah...." :mad:

    Thanks for your comments, everyone. I think that I'm going to email today and say that we really DO want the cgms. I really do want it, and I don't understand how she could express the same level of concern over the lows, but still be so reticent about the cgms.

    I think that she believes I'll become more obsessed with "being just like a pancreas" if we have one, but the truth is that I want the opposite. I want to be more in control, and less controlling.

    I also very much want the peace of mind while she's out of my eyesight. At friends' houses or at school.

    So I appreciate everyone's replies and I'm going to email her about it today and be more specific/adamant.
     
  11. Beach bum

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    Glad your appointment went well and that the A1c went down. Remember, it is not a report card but a snapshot of the last 3 months. It's useful data that will help in continuing to manage diabetes.

    She also was 100% on board with us getting a pump as soon as possible. It looks like it'll be a one-touch Ping, which I like my research on. I do not want pods. Although it does sound freer, the "remote required" is just not realistic for our family.
    The Ping is also paired with a remote. You can however add non-paired meters on. For example, we use the paired at home and whenever we are out as a family, but for school and other activities she uses a mini. Then she just has to manually put numbers into the pump.


    The endo stated that she thinks we'll be happier just getting Kira's numbers more under control, rather than using the cgms. She thinks it will make us crazy by going off every 5 minutes, lol.
    Honestly, the CGM doesn't go off that often. It alarms when she's high or low or out of range. I've been in contact with the school, it doesn't happen often and it is not bothersome.

    I will see how the pump does. If we get the control we need from that, then I will dismiss the idea of the cgms.
    You can never truly control diabetes. Manage it to the best of your ability, but control it no. We found the pump was really helpful in managing diabetes because we can have several different basal plans based on time of day. My daughter needs her largest amount over night, a low amount after lunch etc. Now by adding in the CGM, it helps even more with management, especially during sports and dance.

    I was a little surprised she wasn't bigger on it, since she seemed very concerned about the lows and a seizure.
    A lot of the doctors either aren't totally familiar with the CGMS and I know in our case our docs were turned off by the fact the technology was only OK. That's why they weren't encouraging patients to get it (would give you one if you asked).

    Anyway, she said that she's very, very positive on kids on their honeymoons using pumps (oh dear, it sounds so wrong on so many levels! especially since this would be the WORST honeymoon EVER, if it were a marriage, lol).
    We pumped during the honeymoon and it made life so much more manageable. There is also some thought that pumping can actually extend the life of the honeymoon.

    Kira is 6, but she's on literally toddler doses, and the doses are going down, down, and down. She's currently on a 1:60 ratio, no correction until 300, and a correction factor of 200 (1/2 unit brings her glucose down 100).

    These doses are so very sensitive that it's sometimes impossible to predict the outcome. If I'm off in my factoring by just a few carbs either way, she can plummet or zoom. With a pump, the ability to deliver more accurate doses would be available.


    Yes, you can even turn off the pump at times.

    I will wait and see if the pump provides the improvement in numbers that my endo thinks it will. If the lows continue, I'm going to push for the cgms next time (probably sooner than her 3 month visit).

    I believe I could have pushed harder for the cgms and gotten it, but she sort of convinced me that the cgms might have the end result of me just trying to control it MORE, not less... and that the alarms might be more annoying than useful. My personal jury is out, but I can still push for it next time if I don't feel the pump is the "fix" that will help with these lows that upset me so much.

    While pumps are really helpful and do make things easier to manage with various basal plans, it isn't a quick fix. It may improve things, but it won't fix it totally. Diabetes is a dance, constant movement, you definitely will always be working to find a good balance. I can see where the doctor doesn't want to overwhelm patients with a double start, it is a lot at once. Some people will obsess over the numbers, others will take it for what it is, useful data. But if you do want it badly, you just need to be firm and tell them you want both. But you also have to take your child's feelings into mind. Is your child the type who will be OK with so much change, two sets on her body, two things attached.
     
  12. SandiT

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    She very, very much wants them both.

    Provided they are pink, of course. :rolleyes:

    You might think I'm kidding, but she can't WAIT to get them, because she wants to get the little pouch soooo badly. And when I was looking at the pumps, she'd see a pink one and say, "Oh, I want that one! Can we get that one? Is it coming tomorrow?"

    I could do anything I wanted to her, so long as it was pink or purple. :D
     
  13. Beach bum

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    That's great that she is so enthusiastic, pump packs and set colors always help. Not to be a downer on your parade, but be prepared that there will be times the novelty will wear off. 7 years in, we go through waves of it. We've had the CGM for over a month and a half now and have gotten grumblings about it. Especially today when she wore a dress to school and had no where to clip it to. :rolleyes: For some reason it's not convenient for her to have it clipped to her kit...
     
  14. SandiT

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    Well, I don't think she'll need to wear it all the time, anyway. I don't want to go "fully" onto either the pump or the dexcom. I want these to be tools for me, I don't want to turn them into crutches for myself. I can do that sometimes.

    There will be times that I won't expect her to wear it. I want her to know that, sometimes you can just go back to finger pokes and needles. If you want to wear a dress, then you can... if you're up for more frequent finger pokes and using needles. That's fine with me!

    This for me is about making her safer... but I think that as kids get older, sometimes they really want to just look pretty. She will DEFINITELY be a "look pretty" kid. There's absolutely no doubt or question about it.

    So I suspect that I have years in my future of having to do a lot finger pokes and injections at pools or sending insulin with her for dances.

    I'm okay with that. It's like the "pretty" diabetes bracelet. She's allowed to wear it for special occasions, because I think she's just THAT kind of gal. Frequently, pretty is already more important to her than safety. I hope that these tools will give us a happy medium where I can have the greater sense of safety, while she can still sometimes go without them and both of us still feel good.

    At special times, I'll let her choose if she wants to do frequent pokies or use the cgms. Other times, she'll have to comprise somewhat to safety. But I'll do the best I can to make it more positive for her, like pretty bracelets and pink insets and kittens-on-clouds pump packs.

    There are many things we both have gotten tired of already. There will be a lot more. I hope that I stay flexible without compromising the level of care she gets. We can all hope, yeah? :)
     
  15. Sarah Maddie's Mom

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    I think that you may find that this plan is not realistic. One may opt to cgm part time, but given the cost of sensors I doubt you'll want to making daily or even weekly decisions to cgm or not. Also, for most folks cgm'ing does reduce the number of finger sticks but it doesn't eliminate them all together.

    I'm really not trying to be a drag on your vision, but I just think you have some misconceptions of pumping and cgm'ing. You might not want to share any of the above with your dd until you have had a chance to live with the devices.

    Just my 2 cents.
     
  16. SandiT

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    The bad news is that it looks like Aetna won't cover cgms on anything but a temporary basis, and only in ages 25+.

    I loathe them. I'm sorry, but I do. Such a horrible company for anyone whose child has diabetes.

    :mad:
     
  17. SandiT

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    Yeah, by occasionally, I meant things like prom. Not removing it on every whim.
     
  18. danismom79

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    I was going to chime in with the same advice Sarah had, because it did sound like you were going to give her the option to go back to shots for more than a prom or two. I mean, that's totally your call, but like Sarah said, not very realistic. I also think you have some misconceptions about pumps and CGMs. There are many, many threads on here about both, and I would suggest you do some more reading. You're still new to all of this, and it's ok to acknowledge that you might not know as much as you think you do.
     
  19. Beach bum

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    Well, some insurance is better than nothing. Sadly there are people here who still in this day and age don't even get pumps covered.

    If you go to a large practice or clinic, check and see if they have CGM studies. We currently are participating in one where we are covered by them for year one and in the 2nd year they transition us to insurance, so they do all the insurance leg work to get it covered for us.

    Your doctor can also write an appeal letter stating why it is necessary for your child to have 24x7 coverage. Then, you can be the one to decide how often you use it. Are you finding Aetna only covers for 6 months? Because that is the life of a transmitter. After that you need to get a new one. Could just be at the end of 6 months you need to "refill" it.
     
  20. SandiT

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    I was not meaning it would be on every whim.

    All I've been doing for two months now is reading blogs and posts about pumps and cgms. To the point where I'm feeling very much sick of it and wish I could just put diabetes away for a week or two (but I can't because now we're at the point where we're actually talking doing it).

    Please tell me what you feel I am being unrealistic about, aside from the clarified point that I'm not intending to simply yank the pump or cgms whenever the whim strikes.
     

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